Palliative Care NSW Volunteer Support Services Programme
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Talking about Motor Neurone Disease

Gina Svolos has become well acquainted with the impact of motor neurone disease (MND) over her 8 years as Service Manager with MND NSW.

“It’s a very complex and diverse disease, and it’s pretty horrible. It’s devastating for the family. And it’s frightening for the person not knowing how the disease will progress and how long they’ve got.”

Gina oversees the delivery of services to people with MND and their carers. This includes advocacy, information and resources, equipment hire and support groups. And a small group of volunteers.

“People really appreciate having volunteers. Volunteers assist the MND association in many ways including administrative assistance, fundraising and massage for people with MND. We have a fabulous bunch of volunteers and mostly we have managed to retain them!”

Gina said that the volunteer program that works directly with people with MND is unfunded, it is focussed on massage and due to limited resources mainly operates in the northern and eastern areas of Sydney.

“We would like to expand this program but without funding it is very difficult so we try to work with existing volunteer programs and help resource them to work with people with MND.  The experience of our own massage program shows that people with MND really appreciate this and gain as much from the massage as from the conversations they have with a volunteer.”

She is interested in hearing from existing palliative care volunteers who would like more information on working with people with MND. “MND is a terminal diagnosis, we believe that a person with MND is palliative from diagnosis onwards.”

MND affects everyone differently.  “It can start anywhere in the body, it can have different rates of progression, the average life span is 3-5 years but can be longer or shorter, the typical age of diagnosis is 40-60 years but people can be younger and older.”

In particular, people with MND experience loss of movement through muscle wastage and may also experience difficulty with speech, swallowing and breathing . In about 10% of cases the disease is inherited, but in the remaining 90% of cases the cause is unknown.

“MND affects people from all walks of life, but interestingly researchers have noticed that certain groups of people seem to have a higher incidence. This includes people who are more active and have played sport.” In the USA it is known as Lou Gehrig’s disease, named after a famous baseball player. In the USA it’s also known as amyotrophic lateral sclerosis (ALS).

If you are working or volunteering with a person who has MND then Gina encourages you to:

  • Go to the website for information and resources (http://www.mndnsw.asn.au); 
  • Call the 1800 777 175 for advice and support; or
  • Ask about in-service training and education by MND NSW.

Pic – The MND Icebucket Challenge – that's Gina, first on the left

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